Jana Bergholtz 🕊🇺🇦
@janerle2002
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#EUPATI fellow | Patient Co-Researcher at GPCC/Gothenburg University | @EuropeCavernoma @cavernost Done here, https://t.co/CBNTUiuyX3
Stockholm, Sweden
Joined January 2014
It's #RareDiseaseDay! 👋🎨 We are advocating for symptomatic sporadic #cavernoma to become classified as rare disease in #Orphanet, which would allow researchers to apply for rare disease funding. Atm, only familiar cavernoma are classified as rare. ➡️ Share our video to help!
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Today, we are celebrating #WomeninScience! 👩🔬👩💻👩💼 Thank you so much for all your hard work in understanding cerebral cavernous malformations (CCM) and helping to find a cure for us patients! #cavernoma #kavernom #CavernousMalformation #CavernousAngioma
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Congratulations Favour & team! We patients are deeply thankful for all your hard work! 🙏
I'm pleased to announce that our #NCVR publication has now been released. @MagnussonLab we present the roles of #NETs in the progression of cerebral cavernous malformations (CCM) Read at: https://t.co/L7187l1mKE
#NETosis #CureCCM #TreatCCM #rarediseases
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Delighted to see our work ranking #1 of the Top ten most read BMJ articles in October - https://t.co/TeWKbXjUAM Patient and public involvement in healthcare: a systematic mapping review of systematic reviews @AbSPORU @janerle2002 @TDJeanette
blogs.bmj.com
In October, 4 new articles entered our top ten most read list. The Top 10 is compiled based on full text views, including downloads of the full article PDFs. Patient and public involvement in...
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Vill du vara med och utforma en nationell online-plattform för allmänhetens medverkan i hälsoforskning och innovation? Mer information: https://t.co/n53E4REEWG
#patientmedverkan #NothingAboutUsWithoutUs
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Many thanks to Ida Björkman, Axel Wolf, Vanessa Crine, Helena Cleeve, and Maria-Jose Santana for partnering with me on this! @TDJeanette #PatientEngagement #PatientInvolvement #PublicInvolvement #PatientEmpowerment #NothingAboutUsWithOutUs
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💡 If you are working in #healthcare #qualityimprovement, #patientsafety, #community-based initiatives, #peersupport or #education of healthcare professionals, make sure to check out Table 2 in the article with signposts to conceptual guidance for PPI in these contexts!
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📌 Objectives: ▶️provide an overview of patient & public involvement (PPI) in the meso- & macro-level of healthcare ▶️identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes & research gaps
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As patient co-researcher, I’m happy to report that our ▶️ Systematic mapping review on patient and public involvement in healthcare is now published @BMJ_Open 🎉 https://t.co/W2tAv2s3rN
@symptomsonthego @MariaJ_Santana @CleeveHelena
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Det fanns en stor förväntan på #patientlagen när den kom för snart tio år sedan, men missnöjet är idag stort. Lagen används inte som det var tänkt. Idag lyfter vi frågan i #Almedalen! https://t.co/g8x36dlwkm
@TDJeanette
funktionsratt.se
Seminarium: Varför används inte patientlagen?Det fanns en stor förväntan på patientlagen när den kom för snart tio år sedan, men..
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Niagara Falls lights up for #CavernousMalformationAwarenessMonth! Thank you @NiagaraParks #lightupforcavernousmalformation #cavernousmalformation #cavernoma #cavernomaawareness #stroke #neuroscience #angioma #niagarafalls
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A beacon of hope and awareness lit up Calgary on June 12! Thank you Calgary Tower! #lightupforcavernousmalformation #cavernousmalformation #angioma #stroke #yyc #cavernoma #neuroscience
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Thank you Byward Market for lighting up last night for #CavernousMalformationAwarenessMonth! #ottawa #cavernousmalformation #lightupforcavernousmalformation #cavernoma #angioma #stroke #neuroscience
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🌍TODAY is International Cavernous Awareness Day The Cavernoma community around the World. Raising awareness of cavernoma (cavernous angioma, cavernous malformation) of the brain and spinal cord. Advocating for Research to find a Cure – Because Brains & Spines Shouldn’t bleed
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It's international #CavernomaAwarenessDay and we are releasing the results of our first European Cavernoma Patient Survey! @cavernomauk @CavernomaIre @cavernost @eurordis #Cavernoma #CavernousMalformation
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Alma Ata, 1978, Paragraph IV: “The people have the right and duty to participate individually and collectively in the planning and implementation of their health care.” Use this opportunity to do so:
What do you want heads of state to commit to at the UN High Level meeting on prevention and control of #NCDs in September 2025? Join our consultation! We want to hear from people with lived experience, from member states, organisations and civil society. https://t.co/W6dLJSFlpr
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It's #EuropeanPatientRightsDay! Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease. 👉 Learn more about our eight key asks to future European policymakers!
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